Participate in a research project

Participants Required:

We are inviting parents or caregivers of children on the autism spectrum aged 3 to 16 years who have accessed a hospital (public or private) in Australia within the previous five years (2018-2022) to participate.

Brief Description of Project:

Every day, children and adults on the autism spectrum utilise healthcare services, many of which are in the hospital setting. Some parents and children have told us that they can sometimes experience barriers when accessing these services. We would like to know more about how and when these barriers are experienced. This knowledge will help us work with healthcare providers to understand how and why health disparities occur and assist future research in addressing interventions that improve healthcare for children on the spectrum.

Methodology: Participants will complete an anonymous online survey that will take 25-30 minutes. The questionnaire includes general demographic questions as well as standardised questionnaires about autistic traits and barriers to healthcare.

DOWNLOAD FLYER

Participants Required:

We seek the participation of parents/carers of children (<18yrs) on the autism spectrum. Your participation is welcome and appreciated.

Brief Description of Project:

Studies have demonstrated that sleep problems are more common in children with neurodevelopmental disorders, including children on the autism spectrum. Poor sleep can worsen learning and behavioural difficulties and can aggravate underlying disease, affecting the child and the whole family’s well being. However this is an understudied area and this research seeks to understand more about the current prevalence, management and priorities for families regarding sleep in children with neurodisabilities. The specific aims of this study are:

1. To estimate the prevalence of sleep problems in Australian children with neurodisability in the community
2. To identify sleep priorities of the families of children with neurodisability
3. To understand the current management received by children with neurodisability for sleep problems (including children with different underlying diagnoses)
4. To compare the prevalence of sleep problems in children with neurodisability in the community to those referred to the sleep clinic at the Queensland Children’s Hospital.

Methodology: This study involves a survey of families of children with a wide range of underlying disabilities, including children with autism spectrum. Consumer organisations will be approached and requested to facilitate distribution of an online survey link to families linked with their organisation. Families will be asked to complete 4 questions relating to their child and their sleep. All information will be de-identified when received by the research team from families (transferred directly to a RedCap database when completed).

Participants Required:

We seek the participation of early intervention providers who work directly with children on the autism spectrum including teachers, allied health professionals, and early childhood professionals. Your participation is welcome and appreciated.

Brief Description of Project:

The aim of this research is to gain in-depth understanding of the practices used in autism early intervention, as well as of training and development needs of individuals working in this field. The results will inform professional development approaches in the future.

Benefits to Participants:

The results of this research will contribute to our understanding of the practices used in the autism early intervention field. Moreover, by taking count of participants’ priorities and preferences, they will inform future research and professional development approaches. As concerns participants, we hope that you will benefit through taking the time to recall and reflect on important experiences and challenges related to your profession and work.

Access the survey

Participants Required:

Parents of primary school-aged children (6-13 years) on the autism spectrum.

Brief Description of Project:

We are interested in the associations between parenting practices, parenting stress, and challenging behaviours in children on the autism spectrum, with most research based on typically-developing children. We do not know if these might be the same or different for parents of children on the autism spectrum. Exploring these associations within this population will help in our understanding of specific parenting factors including protective parenting factors, and therefore underline important target variables for parent interventions designed specifically for this group. This study aims to address this important gap in research. The study design is a cross-sectional survey of parents of children on the autism spectrum.

Benefits to Participants:

Through sharing your experiences with us, we hope to gain a more in depth understanding of parenting practices commonly seen in parents of children on the autism spectrum, as well protective parenting factors. We hope to use this information to inform researchers, clinicians, support services, and parents so that they can have a better understanding of parenting practices specific to the autism community and thus develop interventions and strategies to support parents and their children on the autism spectrum. Further, after completion of the questionnaire, you can choose to participate in a prize draw* to win one of three $50 Woolworths gift cards.

Access the survey

Participants Required:

People between 14 and 40 years of age with a diagnosis of autism spectrum disorder may be eligible to join this study.
Participants with a history of seizures, an implanted medical device, or moderate to severe intellectual disability cannot participate in this study.

Description of Project:

Background: Many individuals with ASD experience difficulty with social functioning; for example, in understanding what other people are thinking or feeling. This may cause significant distress and lead to difficulties and anxiety in social situations. There are very few intervention options for improving abilities related to social functioning in ASD.

Aim: The aim of this project is to determine whether rTMS can be used to improve social function. rTMS is a safe and non-invasive means of stimulating nerve cells in a particular part of the brain via the administration of brief magnetic pulses. rTMS has been developed as a intervention for major depressive disorder, and we have previously found that rTMS can benefit social aspects of ASD.

Methodology: In this study we will stimulate a region of the brain that is involved in social understanding and social communication. This region is called the right temporoparietal junction, or rTPJ.

Some participants will receive the real form of rTMS, while others will receive a sham or placebo form. The sham or placebo form mimics the feeling of rTMS, but no brain stimulation is delivered. You will not know which one you receive until the end of your involvement in the study. Those who received the sham or placebo form will be given the opportunity to undergo the real rTMS intervention at the end of their involvement in the study.

Participants Required:

We are looking to recruit pregnant women who have an older child diagnosed with ASD or either parent is diagnosed with ASD.  This is so that the intervention can commence antenatally or very early in the neonatal period.

For participants to be included in this study they must meet the following inclusion criteria:

(1) the infant’s mother must agree to the assessment requirements of the study;

(2) the infant must have one or more biological siblings diagnosed with ASD, or a biological parent (mother or father) diagnosed with ASD; and

(3) As ENACT uses integrated web-based delivery, parents are required to have reliable internet access at home (e.g. ADSL) and must be committed to maintaining internet access for the duration of the study.

The study will exclude potential participants in the case of:

(1) the parents having insufficient English to complete the assessment requirements; or

(2) families who identify at recruitment that they are unwilling to return for the outcome assessments at 6 months and 12 months of age.

(3) infants with a known chromosomal or neurological condition prior to study enrolment

Project Description:

Background: Infant siblings of older children with Autism Spectrum Disorder (ASD) are at an increased risk of a diagnosis of ASD. From 6-12 months of age there are prodromal symptoms of ASD in the domains of motor skills, motor planning, visual attention, visual perception and affect regulation. This can impact on parent-infant interaction and language, social and cognitive development. In addition, mothers of infants at risk of ASD are at risk of poorer mental health when compared to the general population due to the complexity of managing ASD. Currently, there are no trials that have been conducted with infants at risk of ASD younger than six months of age.

Participants Required:

Two distinctive groups of participants are required:

1) parents/guardians of children (<25) with diagnoses of ASD; and
2) adults (>18) with autism diagnoses.

Brief Description of Project:

The primary research objective for the present study is to ascertain parental/ guardian and/or personal (for adults over 18 years) views of certain interventions for ASD, based on their individual experiences. We also aim to identify preferred intervention approaches that may inform research decisions.

Participants Required:

Adults (18+ years) with an autism diagnosis (including a diagnosis of Autism Spectrum Disorder, Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, or Pervasive Development Disorder Not Otherwise Specified (PDD-NOS))

Brief Description of Project:

Social camouflaging is a term used to describe behaviour that hides or masks aspects of oneself from others to ‘fit in’ and to form relationships with others. Little is known about when or how individuals use social camouflaging across various environments (e.g., face-to-face) and contexts (e.g., work vs. social). This project explores how and when different types of social camouflaging are used.

Your participation will involve completing an anonymous online survey that will take 25-30 minutes. The questionnaire includes general demographic questions as well as standardised questionnaires about autistic traits, social camouflaging behaviours, social media usage and other social behaviour.